Tag: pain

A very distressing incident happened at Addenbrookes hospital in Cambridge today, in Health Minister Andrew Lansley’s own constituency. After major surgery Sue Marsh was given a drug that she is allergic to which caused her even more pain, and stubborn nurses refused to give her any other pain relief.

Sue was left in agony after her operation to remove a large section of her bowel when she was given Fentanyl while under anaesthetic. Sue is allergic to Fentanyl and far from reducing pain it actively increases it. (She has previously written about her horrific 1997 experience with Fentanyl.) She was wearing an allergy warning bracelet and the allergy was also noted on her consent forms. In fact Sue had agreed with staff that she would be given Pethidine which is what she had been given after several previous operations and is one of the few drugs that will work for her. When in spite of all of this Sue was given Fentanyl while under sedation, the pain team refused to give her the Pethidine when she came round and refused to call the on-call anaesthetist to change it – they claimed that no one had used Pethidine for years. Even after Sue was able to prove that she had been given it more recently, and prove the agreement to use it on this occasion and her allergy, she was still refused the pain relief that she needed. Faced with this refusal Sue turned to Twitter for help.

Sue Marsh campaigns for disability rights, the NHS and welfare and was the driving force behind the Spartacus Report into the deceitful Personal Independence Payments consultation. On twitter she has six thousand highly politically-connected followers including MPs, journalists from across the political spectrum, political activists and a vast number of sick and disabled people. When she tweeted messages of such obvious distress it created an immediate uproar. Kaliya Franklin (@Bendygirl) quickly made some phone calls and Sonia Poulton came to the rescue. Sonia – a journalist for the Daily Mail – called the hospital and spoke to the Operational Matron who promised to take action immediately. I am pleased to say that Sue was given Pethidine soon after, although as far as I can tell it was not the PCA (Patient Administered Analgesia) which had been agreed on and may have been a relatively small dose.

It is impossible to know at this stage what went wrong here but I hope there will be an investigation into what happened. Certainly Julian Huppert MP has taken an interest and will no doubt ask the right questions. This situation is an extremely serious one. Giving Sue the wrong drug could easily have killed her, and we must ask how often this might have happened to people who are less visible to the public. That decision by itself is bad enough, but the refusal by nurses to correct the mistake is horrendous. Deliberately leaving a patient in pain after major surgery may be considered to be torture.

While the objection to Pethidine PCA would have been a deliberate decision, and the decision to use Fentanyl was perhaps a mistake, it is harder to see how the pain team could justify ignoring Sue’s continuing pain. We can see from earlier tweets that Sue has already experienced similar problems with nurses in her ward:

https://twitter.com/#!/suey2y/status/201404752494469122

https://twitter.com/#!/suey2y/status/201404973056143360

https://twitter.com/#!/suey2y/status/201406727751610370

Please note; I have edited this blog post after talking to Sue about it and I have removed a section which suggested that budget cuts were responsible for what happened. I believe that cuts are harmful to the NHS and will result in serious problems but I have no proof that they were responsible for this situation.

You can read Sue’s tweets from the hospital below, but be warned that they are extremely upsetting.

Last night was a bad night. I had a little less than three hours of sleep and by 7am my pain levels were high. Not so high as to have me curled up whimpering and shaking as sometimes happens, or enough to make me cry out, but enough to ensure that I definitely couldn’t go back to sleep and found it hard to concentrate on anything else.

It’s my feet that hurt the most today. Specifically, the tops of my feet which are aching horribly, as are my fingers and the backs of my hands. My arms hurt too, with the aching seeming to branch out from my hands and shoulders into the arms. Strangely, my elbows don’t hurt. My legs feel like I’ve been beaten up or possibly run over, which is about normal for me but with some extra cramp and shooting pains in my calf muscles. The cramp occasionally stabs at the underside of my feet too. Now that I’m typing I realise that the muscles in my thumbs hurt quite a lot. My usual constant headache might be in the mix somewhere but it’s been masked by more pressing pain elsewhere. Over the last few minutes a familiar burning pain has overtaken the aching and started to spread through my body. It’s the burning that makes me curl up and wish to die, to scream in pain. I desperately hope that it stops before that point. Back in early 2011 I had the burning all the time and I had to take pregabalin (Lyrica) to control it. I didn’t enjoy either part of that experience.

I have had drugs to try and help, of course. At 7am I had 500mg Naproxen, 1g Paracetamol and 30mg codeine. It made no difference that I can tell. I could take more codeine but the result will be that I can’t think and get really drowsy but lie awake in a nauseous opiate haze without actually sleeping. I have distracted myself through the last hour by re-watching episodes of The IT Crowd but my concentration is slipping now and I’ve turned it off.

I get pain most days although not to this extent. The pain has always been put down to my diagnosis of M.E. with the more recent burning possibly being diabetic neuropathy but while it’s a name for it, it doesn’t actually explain what’s causing the pain. It’s just labelled and then ignored. Maybe if I knew why I was in pain it would be easier to accept. I know lots of other people who have similar experiences so I don’t really know why I’m writing this other than to have a moan. Maybe that’s enough of a reason.

I have already written about Homeopathy and Chiropractic. It should be no surprise to my regular readers that I am contemptuous of acupuncture too. There are several problems with acupuncture.

It is based not on knowledge of biology, but on “qi” (energy.)

It does not cure, but it practitioners claim that it can.

Needles can damage nerves and may cause infection if not sterile.

The first point is important. With most medicines we know the mechanism through which they affect the body. We know which part of the body they alter, and we usually know how they work. Acupuncture is based on the idea of qi, pronounced chi, and meaning a kind of energy that supposedly flows around the body through channels called meridians. We have no evidence of qi or of meridians, but we do have evidence of nerves, hormones, chemicals and all the other concepts that make up the human body. Qi was an attempt to explain life before we had the modern knowledge of how the body works. Now we know better.

Acupuncture does not cure anything. We know it doesn’t, because there have been trials of acupuncture. The acupuncture page on Wikipedia lists many of them. Acupuncture may be effective against pain, although the findings of studies vary and there is insufficient evidence to say either way. It is likely that reported pain relief from acupuncture is largely a result of the placebo effect. This is not necessarily a bad thing, since the important thing here is relief from pain and the placebo effect can do that. Acupuncture may also help relieve pain by distraction through simulation of the nerves and the release of endorphins. This is not proven.

For the most part, acupuncture is safe, but as it is an invasive procedure there are risks. There is a danger of infection if the needles and the environment are not sterile. There is a danger of damaging a nerve. There is a danger from a needle entering a lung, kidney or other organ if the needle is inserted too deeply.

Overall, then, some people might like to use acupuncture to provide relief from pain, if it works for then. Unfortunately it does not work in enough people to produce a significant result in tests, and the results that it does produce are likely to be from the placebo effect. It certainly doesn’t cure anything, and if people use acupuncture in preference to tried and tested medicine then they may prolong their illness or endanger themselves by effectively leaving themselves untreated. Acupuncture is not entirely risk free anyway.

I know that in spite of my arguments here many people will choose to believe in the curative abilities of acupuncture anyway. That is their right to do so, but they should understand that belief in qi and the manipulation of qi through the use of needles is not a scientific belief. If anything, it is a religious one.

If someone wishes to choose to use acupuncture instead of researched and tested medicine, I cannot stop them. If it provides pain relief for them, then I am happy for them. I think it is fair to say that of all the alternative treatments, acupuncture shows the most promise of a plausible mechanism and of tests showing a useful difference, at least for pain relief. I take issue with practitioners that make absurd claims about what acupuncture can do; if someone chooses acupuncture because they think that it will cure their viral infection or cancer then they have been conned. At the very least, we have laws against obtaining fees through false claims and against making false claims in advertising material. If someone believes that alternative medicine replaces the need to have vaccinations, then they would be putting the rest of us in danger and that idea would need to be stopped. I wrote about this in my previous blog post, Alternative medicine – a dangerous game.

Sometimes I have to use a walking stick. I walk with a stick because sometimes the pain is too much to put weight on my legs, or my muscles are too weak to hold me up, or I am too dizzy and lack the balance to remain upright. I especially need the stick when I am standing still as without it I can fall over due to all of the above.

I hate my walking stick.

I hate it because it is awkward to use.

I hate it because it prevents me carrying anything with that hand.

I hate it because it stops me holding hands with my wife.

I hate it because it is noisy on the pavement.

I hate it because it allows me to walk further when I should stop and rest.

I hate it because it transfers the pain from my legs to my hands and arms and back.

But most of all, I hate my walking stick because it is a symbol of my weakness. It is a sign to anyone that sees it that I am sick. Weak. I feel self-conscious when I use it, because people look at the stick and judge me. Many of them see a thirty-something man with no visible problems using a walking stick and decide that I don’t need it. Some of them assume that I use a stick in order to look sick to get benefits. (Even when I wasn’t on benefits.) Some of them actually question my use of it, and in the worst case, verbally attack me, even swearing at me.

So I leave my stick at home. That doesn’t work out so well, because what happens is that I walk all the way to the doctor, the pharmacy or the shops without too much of a problem apart from stopping to lean on a wall every so often. Then comes the problem. I get tired. I get pain. I am out, ten minutes walk from home, rapidly losing the ability to stay upright, and I don’t have a walking stick. Having to ask for a chair and stop for a fifteen minute rest in a shop is even more embarrassing than using a walking stick in the first place.

I have got around the problem of not having my walking stick when I need it by using a folding stick which can fit in the (large) pocket of my trenchcoat or in my bag. It’s still a pain to carry around so I don’t always take it, but it’s better than never taking it. I can also surprise people by pulling the stick out of my pocket suddenly and having it click together in a most satisfying way!

Given my embarrassment at using the stick, you can imagine what I think about using a wheelchair. I’ve never used one but the thought fills me with fear. Fear of what people will think, especially if I get out of it occasionally when I have no need to be in it. People do not understand that health problems are variable and that it is possible to need a stick or a chair on some occasions and not others. Or that I could use a wheelchair for a journey but walk around inside the building at the end of it.

I was thinking about all of this again because I have been offered an electric wheelchair that used to belong to a family member. My immediate response is NO NO NO but actually that is stupid of me. There are many times when it would be useful to have one, and there are plenty of occasions when I could actually use it to get around the house. There are times at the moment where I cannot get from the bed to the bathroom or the kitchen, and so I go without food and drink until someone can arrive and help me. I will soon be living several miles from my nearest helper rather than next door, but with an electric wheelchair I could get food and drink several hours earlier than I would otherwise. I might even get more hours in the day because I would start to feel better earlier.

Today is ME awareness day. Or this week is ME awareness week. Or possibly both, I’m slightly confused. Confusion (cognitive difficulties) being one of the problems that affect people with ME.

ME is an invisible disease. Often inaccurately called Chronic Fatigue Syndrome, (CFS) especially in the USA, it is a lot more than just chronic fatigue. ME stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord. The symptoms are many and harsh. Crippling fatigue, headaches, dizziness, loss of balance, nausea, irritable bowel syndrome, muscle pain, joint pain, cognitive problems, and all sorts of other unpleasant things. Any activity results in a massively disproportionate payback. Walking to the shops can cause leg muscles to lock up, go solid and produce agonising pain. Standing in a line is difficult because of pain and dizziness. I’ve written more about this in my blog post What is ME? and I also described how I struggle with waking up in A morning with ME.

ME varies a lot too. I have been so ill as to be housebound or bedbound through much of the last eleven years, but I have also been well enough to work for a reasonable portion of that time. Of course “well enough” is relative, as while I might have looked fine at work (and sometimes I didn’t, to the consternation of my colleagues) I often collapsed in bed as soon as I made it home and was able to do nothing until going out to work the next day. Today I am going to go out for a meeting which is the other end of an hour long motorbike ride. Two months ago I didn’t have a hope of even getting on the bike, but at the moment I can as long as I pace myself, and even then it will hurt tomorrow.

People with ME look well because unless you visit them at home, you only ever see them on a good day, when they have mustered the strength to venture out. That is why the illness is invisible. Spend any length of time with an ME sufferer and you will notice signs of exhaustion creeping in. Visible wilting, muddling of words as brain fog takes over.

I’ve got a big weekend planned. Well, it’s probably not that big a deal for most people, but for me it’s way more than I should be doing. Starting tonight I am heading to Brighton where I will meet lots of people that I have been talking to on twitter and then we are planning to spend a day discussing politics, political engagement and other quite interesting things.

It doesn’t seem like much effort, does it. But Ihave to carefully plan how this will work. To start with, I have all my preparations. I will spend this afternoon collecting medicine from the pharmacy to make sure I don’t run out, packing all the equipment that I need to fit on my bike, re-wiring the satnav power connector on my bike, finding time to squeeze in a shower, draining in itself, and fitting in a visit to the doctor which has been planned for weeks. After all that, I am going to spend three hours riding my motorbike to Brighton. I will be fine on the motorbike as it isn’t that tiring at the time. That pain will come later, which is why I am travelling today – so that I can spend Friday recovering from the preperations and travelling. Fortunately I have somewhere to stay and rest. (Thanks @QOFE!)

Then I’m hoping to meet some twitter friends on Friday afternoon / evening, and get an early night (Hah!) before spending Saturday and Sunday with interesting people and discussions. I suspect that I will end up travelling home on Monday because I will have run out of energy by the end of the weekend.

After all of that, I am fairly sure that I will not be moving much from my bed for a few days afterwards. I know this because after ten years of illness I can judge how much energy I can expend without going too far. As I explained in my page about M.E, there is a vastly disproportionate payback for any energy that I do use, and I am certain that I am going to use way more energy than is sensible this weekend. This is my choice – for the sake of joining in with others and having just a little bit of a normal life, I am making a deliberate choice to overdo it and to crash next week. This is what people don’t see when they say stupid things like “but you don’t look sick!” or “You’re looking well.” This is what the DWP, ATOS and the work capability assesments don’t take into account. Yes, I can look normal, for a little while. I can do some normal things, to some extent. But afterwards I will pay. I will pay a lot more than any healthy person might expect. Imagine if every time you went away for a weekend, you have a week off work with the flu, so severe that you are rendered helpless, and you might start to understand just a little bit. I don’t have to do this, of course. I could stay here, split my time between resting in bed and sitting in a chair, maybe a small trip to the shops. I could choose not to see any friends, and preserve the tiny bit of energy that I have.

This is my choice – I will push myself for the next four days. I will damage myself and I will be helpless and in pain afterwards. But I happen to think that it will be worth it.

I had a panic attack this morning. I don’t make a habit of them, this was only my second ever. The first one happened a few years ago when I had been given amitriptyline to try and reduce the pain I was in. The first day after I had taken it, I ended up in a complete panic, hyperventilating, scared and twitchy. I didn’t know what the hell was going on and so I called 999 to ask. They sent me an ambulance, and a wonderful paramedic who spent an hour holding my hand and calming me down while they took me to hospital. I’m slightly ashamed of tying up those services for a mere panic attack, but like I say I had no idea what was going on and I simply called for help from the only place I could think of.

Today’s attack then. I had gone to bed early so that I could sleep before Portal 2 was released early this morning. Amazingly, I had actually slept, although two hours after going to bed. I woke up with my normal selection of pain and inability to move much, took my painkillers and waited to feel better. While I waited I looked at twitter, and I quickly noticed that I was very irritable and confrontational. I took offence at several messages that weren’t even aimed at me, had a rant and started an argument.

And then as I decided to get away from the internet before I lost all my friends, I felt my mood dropping . A bit like when I hit the low points of depression but even more sudden than that. Then I was crying. The hyperventilating started. Feelings of despair mixed with sheer panic. Why? I have no idea. All I wanted to do before that was wait for the painkillers to work and then play Portal 2. What I had actually done was annoy lots of people then fall apart mentally.

Fortunately my wife came home at that point and a thirty minute hug managed to calm me down. She read out the messages that my friends on twitter had sent me (I had mentioned that my mood was dropping before I became frozen by the panic) and told them that I was all right. Finally I was stable enough for her to go and make me a cup of tea.

That was all a couple of hours ago. Now, I’m exhausted, shaken, in pain because the stress aggravated everything, and still irritable. I’m ranting here because quite honestly, it helps even if no one reads it. If you’ve got this far, thank you for sticking with it.

In one of those odd random blips of popularity, my description of M.E. has been circulating around twitter and Facebook today. I found it quite interesting to read the way people described what I had written. People identified with it, and said that I had described the symptoms well. I found that comforting, in a way, because their identification with it means I haven’t imagined everything. When enough people tell you your illness is all in your head, it’s hard not to question if it is. Even to the point of wondering whether I’m saying I need to rest because I really need to, or because I’m lazy.

M.E. has a long history of controversy. Until very recently, no physical markers have been found for it. Diagnosis has been based on description of the symptoms and by ruling out everything else. Because there is no way to be certain of the diagnosis, public attitude to M.E. has been poor. Names such as “Yuppie Flu” are derisive and contribute to the attitude that people with M.E. are simply faking their illness, and are lazy or work-shy.

Many doctors have held the opinion that M.E. is a mental illness. They conclude that the fatigue and the pain are due to depression, and hold the belief that only therapy such as CBT and a slow increase in activity is necessary to cure the patient. In actual fact, the World Health Organisation classifies M.E. as a neurological disorder under Diseases of the Nervous System, G93.3. The Department of Work and Pensions also categorically states the CFS/ME is physical. Despite this classification, many doctors still believe that M.E. is purely a mental illness.

What is the impact of this belief? One of the defining features of M.E. is that fatigue is not explained by exertion, and in fact is out of all proportion to any activity. In my experience, the best management strategy for M.E. is Pacing. It involves making an effort to stick to a timetable of rests and a set level of activity, and working out how much activity can be undertaken and how much rest is necessary by gradually increasing activity until the maximum level is found, and staying at that level. If pushed into too much activity a person with M.E. will “crash” and may be completely incapacitated for a long time. The standard treatment for M.E. as a mental illness is CBT or GET which will push a person far beyond their safe limits.

Treating M.E. as a mental illness also appears to attach a stigma to it that just shouldn’t be there. Suppose for a moment that M.E. actually is a symptom of severe depression. It may change the treatment, but would it change anything else about the abilities of a person suffering from it? Would it mean that it was OK to tell someone “it’s all in your head” and “snap out of it”? Of course it wouldn’t. Depression itself is a real illness, needing treatment and medicine. Someone with depression cannot simply “snap out of it.” There are M.E. sufferers who are also depressed – I am one of them – but it is important to distinguish one from the other. I have had M.E. for ten years, and depression for a few months. It would be surprising if I didn’t get depressed at some point given the situation I am in.

If I could choose to be better, I would. Of course I would. I’m currently useless, stuck at home, in bed most of the time, my business is failing because I can’t work, I can’t even do any housework. I WANT to be well. I want to be rid of the crippling pain, the migraines, the dizziness, the insomnia. I want to be able to walk, to run, to ride my motorbike. So don’t you ever tell me to snap out of it. I might just have to beat you with my walking stick, just as soon as I find the energy.

I know a few people are concerned about me after reading my recent blog posts, so this is an update on my health and situation. It’s quite detailed so you might not want to bother, or just skip to the summary at the end. I’m also writing this partly for my own record.

Pain and fatigue

I’ve been taking pregabalin (Lyrica) for a few weeks now. For the first week I was quite ill, with dizzy spells and lots of fatigue. During that week I spent several hours in a car and stayed with my wife’s parents, and for a few days after we returned home I couldn’t really get out of bed because of the fatigue. The pain started to ease after that, and within two weeks of starting pregabalin I was nearly pain free. I also had a lot more energy and started to spend twelve hours a day or more out of bed and sitting on the sofa or at my desk.

Unfortunately that was short lived, and the burning pain started to creep back, and I had more fatigue again. The levels of pain are low enough to handle with paracetamol and codeine, so this is what I am doing rather than increase the levels of pregabalin and risk more side effects. I’m currently able to spend about eight hours out of bed, a few days per week. I’m crap at pacing myself, but if I can impose some self-discipline then I might manage to build that up.

Diet

I started following the Atkins diet at the start of March. Atkins, although considered a fad by many, is actually thought to be quite good for diabetics. It had an instant effect on my blood glucose, dropping down to 4 – 6 mmol/l. I dropped my gliclazide which I had previously been taking 120mg / day of. After two and a bit weeks I was very very fed up with Atkins, and I had lost only 1kg, so I stopped the diet and decided just to follow a reasonably strict normal healthy diet as recommended in my diabetes books. At this point I have resumed taking gliclazide again, but less than before, and my blood glucose is within normal ranges most of the time. I’ve also lost 2kg since stopping Atkins! You can see on this graph where I was on the Atkins diet, and how bad I was before I started that.

Blood Glucose Line March 2011

Depression

I posted an article about depression just over a week ago and worried a few of you. I have been really depressed since before Christmas. I seem to have dips in my mood of just a few hours, sometimes even just one or two and at these times I can be suicidal. Most often the dips leave me lying there unable to make myself do anything apart from concentrate on an overwhelming sense of dispair. My friends on twitter have been really helpful in getting me through some of those dips. I have told my doctor about everything and I have been taking Duloxetin for the last month. It clearly hasn’t worked and so today my doctor has switched me to Citalopram.

Benefits and Housing

I wrote an email to my MP about our chaotic situation with our benefits. He has written to our council asking them to look again at our claim, but as yet we have not heard back from them. As far as we know, our court date is still going ahead. In the meantime, my wife has been hired for a full time supply teaching job until the end of the summer term, which is fantastic. It should mean that we can pay the council tax to stop the court case now, and hopefully apply the payment to future council tax when they finally realise that we shouldn’t have had to pay it in January.

Since our landlord decided to kick us out and gave us two months notice we have applied to the local housing scheme. I’ve been really happy to find them moving quickly – because of my health, and our being evicted, we have been classed as “Gold Plus” priority for a new home. The only difficulty now is that they have hardly any homes to offer.

Summary

In summary then, my pain is under control, my diabetes is just about under control, we (probably) won’t be homeless, but I’m still suffering from the depression.

“If human beings don’t keep exercising their lips, he thought, their mouths probably seize up. After a few months’ consideration and observation he abandoned this theory in favor of a new one. If they don’t keep on exercising their lips, he thought, their brains start working.” — Hitch hikers guide to the galaxy

“How are you?” my friends ask. It’s a standard thing to say, a social convention. It’s a convention I find incredibly difficult. I can respond with a lie, of course. I’m almost expected to. “I’m fine!” or “Not bad” will fill the gap in the conversation and allow us to move on.

But I’m not fine. Those days I call a good day? I’m still more sick than a healthy person can imagine.

I say I am recovering, and I am. I am much better than a few weeks ago when I could not get up from my bed, could only lie there crying with pain. Now I can get up, sit in other parts of the house. Last week I even went for a ride on my motorbike! But yesterday when my sister came over for a coffee I nearly fell over after opening the door. I staggered away and managed to stay on my feet by grabbing the walking stick that I keep next to the door. Sitting on the sofa as my sister made the coffee, I was firmly told to stay sat down every time I tried to get up to do anything, because she knew just how ill I was.

A couple of days ago some friends came to visit us and stayed for 90 minutes or so. To begin with, I looked normal. I told them how I was feeling better, how I was improving. Half way through their visit, I got up to get something from my bedroom. I was unsteady on my feet, so that the second time I went to get something I was told not to bother. By the end of the visit, I was very visibly exhausted. Barely standing, face contorted with pain and fatigue. My friends concern was obvious.

Those two examples aside, who else would know what I go through? How would anyone see what I look like when so sick? I only go out when I am feeling good, so others will only ever see my absolute best and most healthy points. If they don’t come round when I am struggling in the morning, if they don’t spend 90 minutes with me until I am completely drained, they will just see a healthy person. I compound the problem by telling others that I’m fine or that I’m not bad, so they have it by my own admission that there is nothing wrong with me.

I highly recommend this blog post by Sue Marsh – The Sickie Friend Slam-Dunk. She explains how even people that see some of her struggle still judge and condemn her. I put it to you that if you know someone that says they are sick, that you don’t know the half of it. You have no idea what they go through when you aren’t looking. You don’t see them crying out in pain, falling over, failing to get to the bathroom in time, the mountains of pills that they have to take. Don’t judge based on what you see. And next time someone says “I’m fine!” just have a think about what they really mean by that.